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July 09, 2009



Eck. It's just like they said. Unfortunately, that seems to be how many special education teachers and therapists seem to think - in high school independent study that I tried to use for studying math, they would try to control me to not spin in my seat, say it is distracting the others when everybody else it busy doing their work diligently - even moreso than most "normal" classrooms.

This attitude seems to be pervasive at all levels, with few exceptions. Even the speech therapist who was actually starting to teach me something useful than the person who did idioms I already knew and preaching / debating why she thought children shouldn't be raised with gay parents after hearing I was going to the Gay-Straight Alliance, starting arguing with me about why she felt it was imperative that everybody engage in "normal" eye contact, despite my explanations that I had several close friendships and number of good acquaintances without using much eye contact at all, and had got a summer job and handled encounters with new people by explaining that not much eye contact doesn't mean I'm ignoring them, but that I need to look a bit off to the side to really pay attention to what they say, and people appreciate that in my experience. But she wouldn't budge! Guess she may not like to think that all that stuff she'd been taught about eye contact being a vital part of social success (when it's really more descriptive of NT social success), might be oversimplified and wrong to enforce on a large scale as necessity, though she wasn't an autism therapist per se.


Oh god yes!
Eye contact is just useful for people who can actually read facial expressions. That's why NT people make eye contact, not because they want to adhere to a social norm.
I can also communicate without much eye contact, I use little hand gestures to show that I'm not ignoring people.

Ari Ne'eman

Whenever I'm thinking back to the social skills training they put me through when I was in an out of district placement, I'm always reminded of the "cargo cults" from WWII. Allied servicemen would parachute into pacific islands and clear airfields to allow planes to fly in with food, supplies and more troops. Native islanders would watch this and reached the conclusion that if they just cleared away the brush and allowed the creation of an airfield, that huge metal birds would come out of the sky carrying foods and supplies. Thus, many airfields were cleared by the islanders to the great bewilderment of allied pilots. Just like forcing Autistics to make eye contact, it's a perfect example of putting form over function and so just utterly missing the point.

Stephanie Lynn Keil

Eye contact isn't a big deal, I agree. But what if you can't hold a conversation or for that matter really even talk? Is it okay to "normalize" the autistic person, just a little, so that they could talk?


Form isn't thought of as complimenting function or the first step to function. It's not so much encouraged or even demanded as much as it is a test and tests are the primary function of a public institution. For those without these social functions such as eye contact, the number one goal of a public servant is to teach obedience. This is especially for "those people" who show their defiance by not following social rules. It is also a time when they are labeled with the test results by their obedience or lack of it and taught their "place" in society. This prepares these people as well as their future caretakers for a life of strict instruction, obedient following, or punishment.

It's the same with the claim that obedience and "good behavior" in schools is a preliminary step which creates the environment for learning. That assumes motivations that public schools can't afford to have. (that's why this ad/video is so misleading)

For a nation such as the United States to function in the way it is set up it must be more important for people to know their place, remain there, and be identified in that way than for anyone to be liberated or succeed beyond how they have been labeled.


"chooses to promote these ads and their goals."

While I don't agree with the message the Autism Speaks ad put out, I would ask you what objections you have with the goals of the legislation? I for one, don't see it as an opportunity for the government to legislate autistics to act more neurotypical, but an opportunity for parents of autistics to afford to provide all the therapies that are needed to help a child develop into whatever they choose to be. I can't let the debate of the use and potential misuse of ABA dictate the need to have therapies covered by insurance companies. Unless you'd prefer parents to forgo Speech and Occupational therapy for financial reasons, I'd suggest that the legislation is needed and is critical for the betterment of the autistic community as a whole...sometimes you have to stand alongside someone you don't like to defeat someone or something you hate...


"sometimes you have to stand alongside someone you don't like to defeat someone or something you hate..."

Certainly I am well aware of that. This is often the plight of oppressed populations, especially the disabled, especially all autistics and especially me.

I imagine that you will vote for the legislation, I expect most people will, and I expect that it will pass. My experiance tells me that the comprimise is not only unnessesary but the ongoing comprimise is very dangerous for all people and worst of all for the most vulnerable.

You have a voice and it will be heard. You stand along side of many well established
citizens and voters who veiw things as you do. My hope is that someday I and others who are the recipient of these therepies and the object of your concern will also have a voice in these matters as well.

John Best

Ed, When you learn how to think straight, you can have a voice. The same goes for young Ari. Until then, those of us who do not have brain damage will do the thinking for you.


With physical an occupational therapy my daughter make have the physical strength and body understanding to walk the Capitol steps.

With behavioral interventions my daughter may be able to practice self control to compose herself and step up to the podium.

With speech therapy my daughter may have a voice to speak her mind the way you do. Even if she winds up without speech, I hope to expand coverage to ANY communication device so that she may be heard.

Without equal access to therapies, families are forced to make choices that WILL adversely impact generations of autistics, the financial burden of proiding therapies is just too great. They will be forced to accept substandard therapies from underpaid undereducated therapists crammed into school days that should be reserved for learning.

We can argue the use and misuse of ABA, but I would submit that ABA abuse will occur with or without this legislation, and likely the quality of research and therapies will improve if we have more people working on it. You also overlook the only alternative the medical community provides to 'treat' autism...antipsychotics. Personally, I'd rather work through a child's issues than dope them up to shut them up.

You may see this legislation as just another step in oppression, but I see it as an important step toward freedom and independence for my daughters.


Again, I am not your competition nor am I an obstacle that stands in the way of what you seek. It is counterproductive to see me that way.

The legislation is not the road to providing the aid you are describing. Anti-psychotics are not used as the alternative autism treatment to behavior modification. They have always been overwhelmingly used as a method of behavior modification and restraint. The arguments claiming that a choice must be made over alternative methods of inappropriate treatments has always been a barrier to progress.

Disabled people and those who have been subjected to inappropriate treatments will always provide you the best understanding of what these treatments are designed to do and how people are affected by them. The outrageously wrongful speculation that is being used now to make the decisions concerning our welfare has been the main source of abuse.


I like Kev, and have always accepted that he is himself "neurodiverse", and can't recall disagreeing with him about anything. Sullivan, I know nothing about. If there was some sort of "introduction", I must have missed it. Going by what I've read, I'm led to think s/he is part of this "autism community" s/he's always talking about, and implying that autistics are a part of. Most parents, such as Bill or JB, just naturally tend to see things differently than autistics who have LIVED it.

We all know that JB is "against" us, and as an "ally", Bill is pretty wobbly. But where does Sullivan stand, and why? There are things to be said for and against this bill, so as a rule of thumb, if Autism Speaks is for it, I'm against it.


I'm not seeing you as an obstacle, but a 'wobbly ally', as Clay puts it. I guess you are right that they don't 'need' your alliance in order to get this passed, but getting a full understanding of the position of those most affected by the legislation is important to me, since my daughter will live in the disability world I help build for her.

"Disabled people and those who have been subjected to inappropriate treatments will always provide you the best understanding of what these treatments are designed to do and how people are affected by them."

Let me rephrase your statement in disageement:

Those who have been subjected to treatments inappropriatly will not necessarily provide you the best understanding of what these treatments are designed to do and how people are affected by them. They will provide me with the insight to understand how and why therapies fail and where therapies are crossing the line into abusive realms. But I feel much of abuse-through-therapy occurs out of combination desparation and ignorance. Mis-understood behaviors mishandled by untrained therapists trying to 'normalize' students is hardly a fair assessment of standard behavioral therapy today. I absolutely conceed that there is still a significant problem with abusive therapies, but I again see the federal legislation as a method to improve conditions in these areas.

Clay, you really have to give me a little slack as to understanding the disability community in general and the autistic community specifically. While you have 'lived' here your whole life, I have only joined it as a result of my daughter's diagnosis some 4 years ago. I may not have 'lived' it, but in a sense, I am 'living' it. I really wish you would look beyond your 'rule of thumb' and see this legislation as a positive step for the autistic community, and not as a pet project of Autism Speaks.

I assume that ABA is everyone's main point of contention Re: this bill, but what would you say about the other covered therapies of OT and ST; wouldn't you agree that they SHOULD be funded by insurance companies?


You are NOT "living it" at all! Your assuptions are outrageous! You would have no method for recognising abuse nor would you have any understanding of disability and the challenges disabled people face.

For the protection of all people who are welcome on this blog and due to the fact that they have few opportunities to voice the issues concerning what they encounter, YOU and your ATTITUDE are no longer welcome on this blog. Live and learn!


I would be interested in Sullivan's position on things too Clay. There are some things that qualify for being and advocate and some things clearly show the opposite. I think Bill tipped the scale of wobbly and stepped into the dark zone.

Allies who don't know what support looks like can attempt to learn. Unfortunately many who claim that is their purpose aren't really interested.


I would have explained to Bill that I did "give him a little slack". I've read him, on and off, in various places starting with the Diva. I can understand that it can be a shock to receive a Dx for your child, especially if accompanied by dire warnings from the physician. I said that parents "just naturally tend to see things differently", how much more understanding could I be?

Four years, huh? On LB/RB today, I saw him complaining about how much all these "therapies" cost, and wanting insurance to cover it. I know for sure that he's been advised that all these therapies are neither all that helpful or necessary, that patient and loving parents could do the job better, and for NO money. I dunno, maybe he and his wife both have high-paying jobs that make it unfeasible to do it themselves. (No, I'm not judging, I don't know anyone's circumstances.) Time to bring up another old cliche - "If you want something done RIGHT, do it yourself!"

Sorry Bill, I think my rule of thumb is a good one. I've been seeing those AS ads on CNN all day, and they're not paying all those ad dollars to help ME, but to help themselves.



This says that 30-second ads on CNN cost 6 to 7 thousand during the day, and 30 thousand during prime time, and that was 7 years ago. I wonder how many times they ran that ad just on CNN today? That's where a lot of walk-a-thon money went!

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